Monday, August 30, 2021

Star Trek To The Rescue

 I'm a huge Star Trek fan. Lizzie is not. If you're not, bear with me. I think it's worth it.

If you're a fan, you may remember the TNG episode entitled Darmok. Picard met an alien who only spoke in analogies, imagery, and metaphors. Temba, his arms wide (welcome, offering, sharing). Darmok, on the ocean (alone). Shaka, when the walls fell (failure).

In these examples, the first word is a proper noun indicating a person or place. The rest of the phrase indicates what happened.

If you don't know what happened when the walls fell, you might wonder if it was a good or bad thing. Same with being on the ocean. And all the other phrases

Throughout the episode, the people struggle to learn a new form of communication. It's an intriguing ending where both races learn to communicate using some of the other race's styles and words. It's a lesson in open-mindedness and determination. When we learn the alien has set up the entire dangerous scenario in order to force the races to understand each other, it becomes more poignant, as he doesn't survive the threat. But he's content at the moment before death as Picard is now able to communicate with him. His belief in the power of and the need for communication is inspiring.

Photo by Dom Talbot on Unsplash

Sometimes Lizzie speaks in analogies or metaphors as well. She's not always able to find the words she needs, but her brain finds another way to express itself.

"Some people might think that was dry." Lizzie wants a drink.

"You're so pretty/smart." Lizzie needs to hear a compliment on how pretty or smart she is. These attributes have always been important to Lizzie. Dementia is making her insecure and we look for ways to boost her confidence.

"You're f***ing stupid." Either we're not understanding or doing what Lizzie wants, or she isn't able to communicate her needs. For this one, I usually bat my eyes, smile, and say, "Such charming language," in a syrupy-sweet tone. Lizzie catches the sarcasm and giggles. This helps break the tension and we can start in again trying to decipher her needs.

"My bum hurts."  Lizzie has been incontinent for a while. This often means she needs to use the bathroom. It also might mean she's been stuck in a position too long.

"It's so quiet." Lizzie wants to sing or hear music.

"It's too loud." "Shut up." "Stop making all that racket." Lizzie is tired and wants to sleep.

"She's ugly/You're ugly." Someone is asking Lizzie to do something she doesn't want to do. She's upset about being asked to do it (brush her teeth, get out of bed, come to the dining room...)

Learning to communicate effectively with Lizzie is an ongoing challenge. It's well worth the effort to listen to not only the words, but the need behind them.

I hope some of this helps. Until next time, Jemi, arms wide open.

How about you? Does your Loved One speak around what they want or need as well? Do you struggle to interpret?

Monday, August 16, 2021

A Good Day

Dementia has settled into Lizzie's brain and is attacking with a vengeance.

But, Lizzie remains Lizzie in some of the best ways. We're sad and grateful and a whole host of other emotions you're probably very familiar with.

Photo by Jon Tyson on Unsplash

Today, when I arrived at Lizzie's nursing home, she spotted me as soon as I walked onto the unit. The room was crowded because they were all gathering for lunch. I was wearing a mask. Sometimes all of that visual "noise" makes it difficult for her to "see" or recognize me. Not today!

I waved across the room as we made eye contact. She smiled one of those wonderful, happy smiles and waved back.

I continued to wave as I maneuvered my way through the dining room. Lizzie continued to wave back and smile. The staff members near her looked up to see what made her so happy. We all grinned. She knew me, knew she was happy to see me, knew we'd have a fun visit.

Cue the happy chills covering my arms.

I took Lizzie out on the balcony to eat her lunch. During the meal, Lizzie mostly wanted to talk. This is an anomaly now, as there are many days when she struggles for words. Obviously, I let her talk and encouraged her words.

While Lizzie's conversation was mostly nonsensical, she appropriately used the words "supposition", "proposal", and "capacity". The phrases she used made sense, but there was no connection between phrases. This didn't upset her at all and she was happy to chatter away while I made encouraging comments as needed.

Dementia's effects on the brain is an endlessly fascinating (and sad) process. You never quite know what each day (each moment!) will bring. It's good to enjoy the bright sparks and moments when they come.

At the end of the visit, Lizzie was exhausted. Probably worn out from all that chattering. I left her smiling.

A good day indeed.

How about you? What kinds of good things have happened in your world recently?

Monday, July 26, 2021

Power of Music 4 - Learning and Growing

 If you know me or Lizzie at all, you know we love music. All kinds of music.

Dementia is a hideous disease that affects the brain in so many ways. And many of those ways involve some kind of loss.

  • precious memories
  • friendships
  • emotional control
  • vocabulary
  • physical control of her body

Lizzie has been in the nursing home for over 5 years now. She's experienced a lot of loss.

What surprised me in recent visits was that she's also shown evidence of learning and growth. Yay!!

As you know, Lizzie and I sing a lot during our visits. It's something she enjoys and it's a great way to help her retain her words and keep that brain active.

The other day, Lizzie started singing a song about Nicholas being ridiculous and not wanting to get up in the morning. She sang the same 3 or 4 lines multiple times. It was a song I'd never heard. I wasn't sure it was real, but when I looked it up, there it was!


This was during the pandemic. There had been so guests in singing or playing instruments. No one I spoke with had ever heard the song.

But, Lizzie was singing it. Not completely accurately, but the song is from the 30s!



When we were little, Lizzie introduced us to The Sound Of Music. We had the record of the movie and listened to it often. When I visit Lizzie we often sing several songs from the musical, including Raindrops On Roses.

When I first started singing this song with her, Lizzie would wave her hand like a conductor. She knew the beat and the rhythm, but the words escaped her. Now, she's able to sing along with the first verse and the chorus.

Repetition has helped her regain the joy of that song.

How about you? Has any song brought you good memories with your Loved One?

Monday, July 12, 2021

Smiles From The Dementia Files: Episode 3

Our Loved One Lizzie is an amazing lady. She is full of fun and mischief. She's always been quick-witted and more than willing to share her opinion on everything!

In our experience with dementia, we've found that laughter is important. It's a key to coping for all of us, including Lizzie. She enjoys being able to shock and surprise those around her with her quick mind and tongue. Having dementia hasn't taken that from her yet, and we hope it never does.


Episode 3
Circa 3 years after diagnosis

In case you need a smile... 

Lizzie: You always loved when we went camping
Me: I did. Tell me about it
Lizzie: We made sure to keep you safe
Me: I'm glad you did
Lizzie: We had a camper when you were little
Me: Did I like the camper?
Lizzie: Oh yes. We had a special spot to keep you safe
Me: Where was it?
Lizzie: We put you in a laundry basket
Me: A laundry basket?
Lizzie: Of course. We wanted to keep you safe. Then we put the laundry basket on the top shelf
Me: You put the laundry basket with me in it on the top shelf of the camper?
Lizzie: Only when we were driving
Me: Well, thank you for keeping me safe!

(Photo by Kevin Schmid on Unsplash)

Things to know:
  • We NEVER owned a camper
  • We NEVER went camping as a family
  • That probably wouldn't have been safe! 🤣🤣🤣

How about you? Any ridiculous stories to share? Anyone else get stuffed in laundry baskets?

Monday, June 28, 2021

Where Everybody Knows Your Name

With pandemic restrictions easing, we've moved into a new stage for our visits with Lizzie in the nursing home.

My sister and I are now fully vaccinated. Lizzie has been fully vaccinated for a few months.

Because of that, we are now allowed to visit her without our face shields. We still wear our masks, but the clear plastic shields that cover our faces are no longer required. Yay!

When I arrived at the nursing home, Lizzie was sitting at her table in the dining room. I waved when I walked in as I always do. I walked toward her smiling.

Before I could say my usual greeting (Hi Mom. It's Jemi! I'm here for a visit), Lizzie smiled back and said, "My baby."

This is the first time she's recognized me in months.

I did a happy dance and made her laugh.

About 30 minutes into the visit, Lizzie turned to me and said, "What's your name?"

"I'm Jemi."

Big smile. "I have a daughter named Jemi."

"That's so nice."

Then she turned back to her meal and took another bite. Sure, I could have said I was her daughter, but that seemed a little mean. She was happy and content and I didn't want her to lose that.

Photo by Markus Spiske on Unsplash

So, you win some, you lose some!

Even if it was just for a few moments, Lizzie recognized me without prompting.

Day = Made!

How about you? Any easing of restrictions? Any reactions to wearing fewer pieces of PPE?

Monday, June 14, 2021

Small Gratitudes

 As we all know, the pandemic has been hard. Really hard.

In Lizzie's nursing home, the residents live in units of about thirty people. At the beginning of the pandemic, those rooms were full.

They are no longer full.

Death is a part of life, and in a nursing home, it is much closer than for most people.

Lizzie is at a stage in the dementia process where she rarely thinks of the people surrounding her unless they are right in front of her and interacting with her. She spends a lot of her time thinking about her childhood and her parents and brother.

When we're with her, she thinks about us. When she's with the people living in her unit, she thinks about them.

An elderly hand holds onto a younger hand

Photo by Gert Stockmans on Unsplash

The cliché Out of sight, out of mind, is often true for her right now. Which isn't a bad thing.

She doesn't realize that over the past year, she has lost many of her friends. She doesn't realize that in the past week, the two people she was closest to in her unit have died.

She's not grieving their deaths like we are.

When she passes their rooms, she doesn't notice the missing photos or name plates. Or the new people. She's focused on her inner world and the parts of the outer world that affect her.

Not a bad thing.

Even in the midst of a pandemic, even in the midst of dementia, there are things to be grateful for.

Hoping you have things to be grateful for today as well. Feel free to share!


Monday, May 31, 2021

Don't Let The Sun Go Down

I was driving home from the Nursing Home one night after visiting with Lizzie.

It had been an odd visit. Lizzie had exhibited extreme paranoia about another resident. He was someone she'd known for months but she was suddenly afraid of him. It didn't help when the poor man walked by us multiple times as we chatted.

Then Lizzie told me a story about how I watched myself begging for a library card. Both the Begging Me and the Watching Me wore the same bright yellow rubber boots. She was surprised I didn't remember watching the two of me.

Lizzie then told me about letting That Man into the house because his mother was an Artiste (said with a French accent) and they wanted to see her flower gardens. Not everyone had an Artiste wanting to see their gardens, so she'd let them into the basement to see the tulips. Wasn't I proud?

Of course I was.

Another evening of Sundowning in action.

(Photo by Anand Rathod on Unsplash)

On the way home, The Elton John song Don't Let The Sun Go Down On Me came on the radio.

I've always liked the song, but that night I started to wonder.

Did Elton John and/or Bernie Taupin have some experience with dementia in their lives? Was the song alluding to Sundowning?

Probably not, but when you hear it, you might find some lines that make you wonder.

 What do you think?


Monday, May 17, 2021

Essential Caregivers in a Pandemic

 This pandemic has been hard on everyone.

We're very lucky with Lizzie's nursing home. The people are almost always kind and caring with her, even when they're understaffed.

Lizzie wasn't eating well during the early part of the pandemic and she wasn't thriving. Sis and I were declared essential caregivers to help her out.

This means we can go and visit her at meal times to help her get more fuel into her system.

It's made a huge difference for her. She's eating more and has regained the weight she lost. She interacts more with the staff even when we're not there. That one-on-one attention with us has helped.

We're lucky.

When we enter the home, we need to have proof of a negative COVID swab from the 4 previous days (which means we've had COVID swabs every 4 days since before Christmas). We wear a mask and a face shield. If there is a potential issue in the home, we wear full PPE.

Lizzie was taken aback by the masks and shields at first.

Photo by visuals on Unsplash

She'd want to know why we were wearing blue makeup. She'd ask who we were. She'd say we looked awful.

It didn't take too long for her to get used to it, but it makes me wonder what her reaction will be when we don't need to wear the masks and shields anymore.

Will the change throw her off again? Or will she slip back into recognition of our faces?

Only time will tell.

How have you been coping with the lockdowns?


Wednesday, November 18, 2020

AlzAuthors

 Today I am thrilled to announce that I am an official AlzAuthor!

AlzAuthors.com is an amazing community of authors and bloggers who are all working to raising awareness of Alzheimer's Disease and other forms of Dementia. There is even a podcast.

Sadly, until we are confronted by the disease itself, many of us know very little about dementia. This was certainly the case for our family. We have learned the hard way and wish we'd known about resources like this site earlier!

The various forms of dementia present in a variety of ways and of course each person is unique. These are some of the reasons the disease can be difficult to identify. The resources at the main site are boundless and incredibly helpful. I hope you'll check it out.

My book Dancing With Dementia is now a part of the AlzAuthors collection of resources. I'm proud to be part of an incredible group of talented authors who have used their experiences to reach out and help others.

I have a post on the AlzAuthors blog today as I join the community. I hope you'll visit the website for more details. I'm sure you'll find something to help you and your family along this journey!



Monday, November 9, 2020

Self-Care 2

Being a caregiver is often exhausting. Both physically and emotionally.

Caregivers need to take care of themselves. It's a cliche for a reason, but you can't get water from a dry well.

Keeping ourselves in good shape emotionally and physically can be a challenge.

Today, let's talk about how to do some easy at-home self-care by being silly.

Here are a few things you can search for online that might get you and maybe even your Loved One in a silly mood.

  • baby goat videos
  • goat sings Whitney Houston (trust me on this one!)
  • jokes for kids
  • knock knock jokes - if your Loved One is still able to read, have them do the reading while you do the answer part, they'll enjoy it more
  • silly jokes about summer (winter, Christmas, birthdays, Halloween, sports, food...)
  • blooper reels for your favourite TV shows or movies
  • kids laughing
  • sports gone wrong
  • pandas
  • silly animals

(Photo by Antevasin Nguyen on Unsplash)


Of course, you don't have to go online to get silly.

  • have a dance party to music from all different generations and styles (Lizzie is in a wheelchair but she still loves to dance!)
  • talk about memories of silly times
  • sing songs from childhood (Row your boat, Doh a Deer, Itsy Bitsy...) and make up the words if you can't remember them
  • draw silly pictures (combine an alligator & mouse into a new animal, draw a squiggle & turn it into a picture)
  • write a silly story and add in drawings (Once upon a time there was a raccoon who wanted to meet Lizzie for tea...)
  • tongue twisters (red leather, yellow leather always gets me!)
  • limericks (There is a young lady named Lizze, who keeps her daughter in a tizzy, they love to sing songs, the shorts & the longs, and Lizzie keeps everyone busy!). Obviously they don't have to be perfect!

There's really nothing quite as healing as a good belly laugh!

Check out the book Dancing With Dementia for more easy self-care tips.

How about you? Any more ideas about silly things to search for? Any other ways to get a good belly laugh?

Monday, October 12, 2020

Smiles From The Dementia Files: Episode 2

Our Loved One Lizzie is an amazing lady. She is full of fun and mischief. She's always been quick-witted and more than willing to share her opinion on everything!

In our experience with dementia, we've found that laughter is important. It's a key to coping for all of us, including Lizzie. She enjoys being able to shock and surprise those around her with her quick mind and tongue. Having dementia hasn't taken that from her yet, and we hope it never does.


Photo by Roman Kraft on Unsplash

Episode 2 - Memories
Circa 2 years after diagnosis


According to Lizzie ... 

Lizzie was in charge of escorting the little kids to air-raid shelters during WWII because she was organized, strong, and smart. Lizzie ensured that the children had partners and walked in pairs in an organized fashion from their classrooms to the shelters. She checked that each child carried his/her gas mask. If anyone became stressed it was Lizzie's job to calm them down and make them feel better. Once they arrived at the shelter, Lizzie counted to make sure no one was missing. To help everyone relax, Lizzie led them in songs and story-telling.

Lizzie was born and grew up in Scotland in a city that was a frequent target of bombing. The trauma of living through that kind of experience has life-long impacts.

Lizzie was also 6 when WWII ended, so she might be a bit optimistic about her role in these events.

Of course, we congratulate her on being a responsible helper and encourage her to share more of her stories with us.

Memories (whether they're historically accurate or not!) are a great way to encourage conversation and connections.


How about you? Any recent smiles?

Monday, August 31, 2020

In-Person Visits at Lizzie's Nursing Home

 This pandemic has changed so much for so many.

One of the major changes is for those people living in Nursing Homes (NH), including Lizzie.

If you've read any of the previous posts (or Dancing With Dementia), you know we live in Canada and that Lizzie is in a wonderful NH with caring staff who work really hard to ensure our Loved Ones are safe and well cared for.

For several months earlier in the pandemic, we were able to do Face Time visits with Lizzie. These were great.

For the past month or more, we've been able to do in-person visits.

Even better.

Seeing Lizzie in person has been awesome. With over 4 months between our last in-person visit and these ones, we were bound to notice some differences.

We find Lizzie is less aware of the 'real world' and more absorbed in her inner world. Not unexpected. Before the pandemic, we'd been noticing it was more and more challenging for Lizzie to remain with us in the regular world and in regular time. We found our daily visits helped her keep connected to us as we are now.

Since the daily visits had to halt, Lizzie has spent less time connected with us and our current realities. I imagine she has spent more of that time in her inner world. In that inner world, it appears Lizzie is younger and extremely capable.

And that's okay. We want her self-esteem and confidence to remain high.

During our visits we see her struggle to know us. Once she hears our names, her face lights up and she says she didn't recognize us. Possibly because she thinks more often of our younger selves.

She doesn't always know who we mean when we speak about her grand-children or great grand-child. But she loves seeing pictures of them anyway.

Music continues to be a source of joy for Lizzie. When we find her mind drifting to sad memories or thoughts, we can generally use a song to cheer her up.

During our last visit as we were leaving, Lizzie became upset and angry. "You're leaving because you don't love me."

Not true. But impossible to convince her with words.

What did work?

Skinnamarink by Sharon, Lois and Bram.


If you don't know it, check out the link. My kids loved the show when they were little and Lizzie remembers us all singing together. The book about the song is a family favourite.

The repeated echo of us singing, "I Love You," helped us leave her with a smile on her face.

How about you? How are your Loved Ones coping?

Monday, July 13, 2020

Using Improv Skills To Improve Communication

Once Lizzie was in the Nursing Home (NH), we found that her friends dropped away rather quickly.

Many people found it challenging to spend time with Lizzie. She was still outgoing, friendly, articulate, and happy. So what was the problem?

The problem was that Lizzie didn't react as they expected her to react. She got facts wrong. She told stories that didn't reflect reality as the listener remembered it. She didn't remember some of their time spent together. She would sometimes tell stories that didn't make sense. She was sometimes determined to make the friend do something the friend had no desire to do (take Lizzie out to a restaurant).

Lizzie's friends had no idea how to react to these changes and all of that combined made visiting troublesome.

I wish I'd had this video to show them!

This video is a TEDMED. It showcases some positive ways to interact with someone living with dementia.

The people in the video have realized that the guidelines of improv acting are very similar to the guidelines for interacting with someone with dementia. They show a couple of scenarios to help viewers get the idea. They give concrete examples of "go with the flow" and "live in their reality."

I loved the "yes, and" tip. People living with dementia hear No a lot. Using "yes, and" is powerful!

LINK

How about you? Have you seen this video? Any tips to help friends be more comfortable visiting people living with dementia?

Photo by Avel Chuklanovon Unsplash